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Dementia’s journey

Dutchman

Registered User
May 26, 2017
522
Devon
I’m beginning to wonder if after a while people like us start to loose the close connection we have with our loved ones primarily because they’re not with us every day.
It’s different if they were just away and were coming back but the permanence of lose, the fact that they won’t ever be on the sofa again next to you, well it gets to me and frightens the life out of me.

All I rely on at the moment is distraction. Sleep more, movies, books, garden when it’s dry, not that much takes my interest indoors so hoovering, dusting, sorting out stuff I just leave. All of it seems so pointless in the scheme of things.
When it’s quiet indoors my minds thinks such things. I’m almost glad I’ve got a stinking cold, at least it redirects the unhappiness
 

Pete1

Registered User
Jul 16, 2019
557
All of it seems so pointless in the scheme of things.
I hear you @Dutchman. This week I have been clearing stuff out, and I was reading some rather wonderful letters from my one and only fiance....she passed away a few years ago, totally unexpectedly. What I am trying to say, in a ham-fisted way is love Bridget every day in your own way...it doesn't mean attending. All the best.
 

Vintagegal13

Registered User
Aug 29, 2019
10
Hello Dutchman, I hope you are drinking lots of liquids and keeping warm. Just a thought - have you considered volunteering at an animal shelter, that would give you lots of animal contact before making the big commitment of getting a pet. Sending love and strength to you.
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
I’m beginning to wonder if after a while people like us start to loose the close connection we have with our loved ones primarily because they’re not with us every day.
It’s different if they were just away and were coming back but the permanence of lose, the fact that they won’t ever be on the sofa again next to you, well it gets to me and frightens the life out of me.

All I rely on at the moment is distraction. Sleep more, movies, books, garden when it’s dry, not that much takes my interest indoors so hoovering, dusting, sorting out stuff I just leave. All of it seems so pointless in the scheme of things.
When it’s quiet indoors my minds thinks such things. I’m almost glad I’ve got a stinking cold, at least it redirects the unhappiness
Yes I recognise the feelings. John has been in hospital for over three weeks and I have only just started to make proper meals, and that is quite an effort. Cooking for one is not quite the same. And the quiet of the house is not the pleasure I once thought it might be years ago!
Take care of yourself and hope the cold goes away soon.
 

Dutchman

Registered User
May 26, 2017
522
Devon
Yes I recognise the feelings. John has been in hospital for over three weeks and I have only just started to make proper meals, and that is quite an effort. Cooking for one is not quite the same. And the quiet of the house is not the pleasure I once thought it might be years ago!
Take care of yourself and hope the cold goes away soon.
Yes, you can imagine what’ll be like to cook for one, think it might be ok and you’ll be ok but reality for me means stir fries, ready meals, quick nutrition like fruit and bread.
I’ve just got back from the home and colds are spreading and Bridget has a chest cough and has to have help to blow her nose. I hope the Carers do the same. She smiles and says it’s nice to see me. Still battles me when I try to remove her old pants for clean ones and try to do personal cleaning but I get there in the end, into her pjs and dressing gown. I come home satisfied I’ve done something good for the one I love.
 

Dutchman

Registered User
May 26, 2017
522
Devon
I’m told by my counsellor that because my life has changed out of all recognition that it’s normal to feel loneliness, to miss my wife and all those other horrible emotions.

Again I’ve not been in to see Bridget and I can’t help myself from feeling that I’m getting used to not seeing her. My lovely wife who gave me 25 years of normal marriage is now lost to me and I can’t help feeling I’m abandoning her to her fate.

I must go in tomorrow to see her. Even with all the horrible history of dementia behaviour I still love her the same.
 

canary

Registered User
Feb 25, 2014
11,592
South coast
Its perfectly OK not to go in every day.
Both Bridget and you are beginning to adjust to the situation - which is not the same as abandoning her.
 

Dutchman

Registered User
May 26, 2017
522
Devon
Thanks canary. Why can’t I just accept that Bridget will be ok if I don’t visit every other day. I suppose it’s because I can’t come to terms with the the fact that I looked after her for more or less 3 years and now she’s not here, my role is gone. I worry, but that not accomplishing anything but I still worry.

it’s dreadful weather and I’ve nothing doing today so I’m tempted to go back to bed but I’m seeing that as a bad thing. I just wish I could give myself permission to do what I want without self judgement, seeing myself as lazy, weak, selfish and on and on.

A virtual hug to all on the forum. Oh how I wish we could meet up for actual support
 

Pete1

Registered User
Jul 16, 2019
557
Why can’t I just accept that Bridget will be ok if I don’t visit every other day.
Hi @Dutchman, when my Dad was in residential care my Mum would visit every day - I tried to encourage her to take a break and reduce the frequency, but she couldn't do it. What I could see unfolding before my eyes was that each visit was making her very ill (the emotional distress) - and indeed she collapsed and was 'out of action' for 5 months and even after then her mobility was compromised, making visiting difficult. I continued to visit Dad 3 or 4 times a week but his dementia was quite acute (physical impairments as well as cognitive/memory).

Roll on seven years later and Mum was in residential care with dementia, and it was only then that I really understood the need to attend. So I totally understand it, but in my opinion you have to look after yourself too, I should have been firmer with Mum and encouraged her to reduce the frequency of visits, it 100% led to her health problems. Please take care of yourself and do what you feel is right for you on the day, your wife is well cared for and she would want you to be cared for too. Stay strong.
 

Dutchman

Registered User
May 26, 2017
522
Devon
I want to write this while it’s still fresh in my mind.

I went the home tonight, just back. Bridget was pleased to see me and after a while wanted to go upstairs to her room. So we go up, me having the intention of getting her ready for changing into her night wear.

She lies down on the bed and then tells me to and we laid there for 30 mins with our arms across each other. She has her eyes closed, quite content and I’m of course happy this has happened. She hasn’t wanted to stay in her room before, now this has happened and I’m home now and a little confused and upset (would you believe it) because affection has been off and on and this gives me hope for more but it can never be back to normal.

I want to lie next to her in our own bed.

I’m now going to miss her each day even more now. When things like this happen I always think what it would be like if I brought her home, but I know it just a dream.

what a state to be in!
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
I want to write this while it’s still fresh in my mind.

I went the home tonight, just back. Bridget was pleased to see me and after a while wanted to go upstairs to her room. So we go up, me having the intention of getting her ready for changing into her night wear.

She lies down on the bed and then tells me to and we laid there for 30 mins with our arms across each other. She has her eyes closed, quite content and I’m of course happy this has happened. She hasn’t wanted to stay in her room before, now this has happened and I’m home now and a little confused and upset (would you believe it) because affection has been off and on and this gives me hope for more but it can never be back to normal.

I want to lie next to her in our own bed.

I’m now going to miss her each day even more now. When things like this happen I always think what it would be like if I brought her home, but I know it just a dream.

what a state to be in!
Its so nice that your wife seemed so content and understandable that you feel sad at the memory of your afternoon. There will be many here thinking of you. Thank you for sharing these emotions.
 

Dutchman

Registered User
May 26, 2017
522
Devon
I’m not going in to see her today as I’ve got a cold and don’t want to infect others. Tomorrow more I’m going to the home to meet up with the dietician so we can discuss Bridget and her appetite.
I hope she’s ok. I’m a Mr worry guts.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,649
I’m not going in to see her today as I’ve got a cold and don’t want to infect others. Tomorrow more I’m going to the home to meet up with the dietician so we can discuss Bridget and her appetite.
I hope she’s ok. I’m a Mr worry guts.
Try not to worry about things so much. Nothing you do will change the situation with your wife’s Dementia
 

Dutchman

Registered User
May 26, 2017
522
Devon
Try not to worry about things so much. Nothing you do will change the situation with your wife’s Dementia
I know, I know , I shouldn’t worry as the staff at the home are doing a great job. The dietician spent nearly an hour with me and the manager and I think she came up with some ideas. I’m glad this happened because at least I know I’m doing all I can to help.

thanks for your thoughtful comment
 

Dutchman

Registered User
May 26, 2017
522
Devon
She’s told the staff at the home that I’m a good friend. I haven’t seen her today as she was still in bed this morning when I was talking to the dietician.

I’ve now made the silly mistake of looking a pictures of Bridget when she was ok and then some I took when at the home. I can’t help myself. I could ask ‘why us’ but there no reasonable answer to that. It’s not fair. Although in her mind I’m not her husband any more I remain totally in love with her and that’s what hurts so much.
 

kindred

Registered User
Apr 8, 2018
2,359
She’s told the staff at the home that I’m a good friend. I haven’t seen her today as she was still in bed this morning when I was talking to the dietician.

I’ve now made the silly mistake of looking a pictures of Bridget when she was ok and then some I took when at the home. I can’t help myself. I could ask ‘why us’ but there no reasonable answer to that. It’s not fair. Although in her mind I’m not her husband any more I remain totally in love with her and that’s what hurts so much.
I would settle for good friend, Peter. Understanding relationships like husband and wife often becomes impossible and I know it causes so much hurt, but it is often too sophisticated a concept for the mind to retain. The bond between you is so evident and beautiful and you,bless you, are doing all you can to maintain it. All honour to you. I know it hurts and you know I know, as I am always saying to you!
warmest, Geraldinex
 

northumbrian_k

Registered User
Mar 2, 2017
963
Newcastle
It is enough for me that my wife is more settled, seems pleased to see me, likes hugs and attention, occasionally calls me by name and even says that I am 'a canny lad'. She did not recognise either of us in a wedding photo so I haven't shown her any more. I am her husband whether she knows it or not. But knowing that she is loved is more important than any label.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,634
Kent
I agree @northumbrian_k

There was a time when I thought the lovely smile I received when I visited was just for me until I realised my husband gave the same lovely smile to his carers and other visitors who greeted him.

At first I was taken aback a little until I realised he would not be smiling at everyone if he was unhappy or in pain.
 

Dutchman

Registered User
May 26, 2017
522
Devon
I would settle for good friend, Peter. Understanding relationships like husband and wife often becomes impossible and I know it causes so much hurt, but it is often too sophisticated a concept for the mind to retain. The bond between you is so evident and beautiful and you,bless you, are doing all you can to maintain it. All honour to you. I know it hurts and you know I know, as I am always saying to you!
warmest, Geraldinex
Again I’m not going to visit my wife as I have a cough that won’t go away.

I’m sitting on the sofa after watching a film and it’s now quiet. And when it’s quiet that’s the time it hits me that I’m on my own and will be now for the future. That’s not how we planned it and people who find themselves parted from their loved ones, I know, are going through the same agony as me. How does anyone manage a little peace, obtain some form of comfort from all this? Or is it that we just have to get used to it because nobody can do this grieving for us.

Pills, counselling, good friends, support from the family are very welcome but gone is my loving hugs, my equal in thinking, planning, and just plain loving. And we can come back to an empty house surrounded by all the things that we alone hold the memories of. Never thought that life would turn out this way did we? I thought that this only happened to other people, that we were safe from dementia. Sure, something else might have got either of us eg. Cancer, but we could have still been a couple and some company for each other for some time.

Sorry to be so sad but it helps to get the thought out into the open.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,649
Again I’m not going to visit my wife as I have a cough that won’t go away.

I’m sitting on the sofa after watching a film and it’s now quiet. And when it’s quiet that’s the time it hits me that I’m on my own and will be now for the future. That’s not how we planned it and people who find themselves parted from their loved ones, I know, are going through the same agony as me. How does anyone manage a little peace, obtain some form of comfort from all this? Or is it that we just have to get used to it because nobody can do this grieving for us.

Pills, counselling, good friends, support from the family are very welcome but gone is my loving hugs, my equal in thinking, planning, and just plain loving. And we can come back to an empty house surrounded by all the things that we alone hold the memories of. Never thought that life would turn out this way did we? I thought that this only happened to other people, that we were safe from dementia. Sure, something else might have got either of us eg. Cancer, but we could have still been a couple and some company for each other for some time.

Sorry to be so sad but it helps to get the thought out into the open.
very cathartic putting words in black & white. Sadness is grieving for what you are losing, but believe me even when Dad propositioned me as I was no longer his daughter in his mind - when Dad told me he wasn’t married - didn’t have children etc
His eyes always lit up when he saw me. In his heart there was always recognition.

it is said that the heart has as many memory cells as the brain. I cling to that wether it’s true or not, & believe that though the mind can play tricks the heart stays true.

enjoy the lovely weather if you can get out for a walk.
When you are loved you are never truly alone, we just have to look a little harder to see this at times. x